Coding grief

Kevin's mother and father came to what should have been his 4-month group well-child appointment without him. They came, his mother said, because Kevin would have wanted them to come. They came, his father said, to let all of us know about him.

Four-month-old Kevin had been smiling and laughing 3 days earlier, and his mother told us she couldn't wait to show him off to Dr. Lucy, their pediatric resident physician. They came now without him because 4-month old Kevin had died 2 days earlier and was missing his health maintenance appointment [for] an appointment with the medical examiner.

Kevin's parents came to his appointment without him, I think, because they were getting something out of his health-maintenance appointments.

Health maintenance appointments, also called checkups or well-child care, have been a part of pediatric care for over 50 years. In these appointments, babies get measured and examined. They get vaccines and sometimes a sticker or a book. Parents get the satisfaction of knowing that thoughtful, highly trained people have examined their baby and vaccinated him. Parents get guidance in topics that we clinicians and our national organizations have deemed important and appropriate.

For years, researchers have been asking parents what they want out of their child's health-maintenance appointments, and what we have learned has been instructive: Parents want more advice on child-rearing in general, and specifically, they want advice on sleep, learning encouragement, and discipline. Parents want to have their values and parenting style validated. Parents want to feel like the clinician has the time to sit down and get to know their family.

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Parents know what they are talking about. Better communication may be an intrinsic good but it is much more. There is increasing data that better communication with parents and focusing on topics about which they care lead to better family adherence to the medical plan and better health outcomes.

Kevin's family is 1 of about 50 at the Yale-New Haven Primary Care Center who have elected to receive their child’s first year of well-child care in groups. They volunteered to be a part of an innovation in healthcare where we have 4 to 6 families of children all within weeks of each other's age receiving their physicals and vaccinations together.

In group well-child care, we, the clinicians, plan a few topics we plan to discuss with the families and then let the families choose the rest of the topics, which means that more than receiving anticipatory guidance together, they create the anticipatory guidance together. We are training more and more of our residents in group well-child care because we believe they are learning important skills in communication and guidance.

I am convinced that having a group of parents discuss both our medical expertise and their life experience-and not one or the other-is far more powerful when combined. For example, when a grandmother told the group that she used to smoke over her baby's crib, she not only admonished the new mothers in the group to quit, she turned to the clinicians in the room, both of us with our mouths agape, and reminded us it was then our job to share the evidence for smoking increasing the risk of [sudden infant death syndrome], ear infections, and asthma exacerbations. After a few frozen moments of not understanding our role, we jumped into the conversation, and the grandmother jumped with us. It felt like being on an expert panel with the grandmother.

But the 4-hour training session in which I find myself the day after Kevin's parents came to his appointment without him is not a conference helping pediatricians learn to grieve with their patients. It is not a meeting to discuss how we teach our trainees to deal with their personal and professional grief. It is not a meeting about communication skills. The training session in which I find myself is a training session in how to use the [electronic medical record (EMR)] that we will be initiating throughout our hospital system.

I learn that with the EMR, International Classification of Diseases (ICD) codes (ICD-9 and ICD-10) will be easy to find. I find myself focusing on ICD-9 code 309.0: Bereavement. Bereavement due to life event. Bereavement, complicated. Complicated bereavement. Complicated grieving. Grief reaction. They can all be coded as 309.0.

I am told that 309.0 is a billable medical code that can be used to specify all these diagnoses on a reimbursement claim. Or V62.82 to code for "Bereavement, uncomplicated." Or V61.07 to code for "Family disruption due to death of family member." I wonder if these codes will ever appear on Kevin’s parents’ medical records. Or, will the clinician have a litany of check boxes to get through, none of which will allow Kevin's parents the space to share their grief?

The ICD-10 may be an improvement. It has a code, Z63.4, for "Disappearance and death of a family member." Leaving his pacifiers, his bottles, and his toys. Adding the term “disappearance” might be closer to what Kevin’s death feels like to his parents.

I am in favor of EMRs. I believe the new EMR will let me communicate better with other professionals and with parents of my patients.

I believe that the ability to organize data will help us improve care for our patients and satisfaction for ourselves. But this day, the day after hugging Kevin's short, loquacious mother and tall, taciturn father, the day after they came to group well-child care and shared with us his short life and his death, the day after Kevin's mother told us she was too young to bury her child, all I wanted to do was either hug her or find a way to help her heal.

But that is not to be.

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The cruel juxtaposition of these 2 days--Kevin's day and the EMR's day-places our priorities and what we mean by “meaningful use” in medicine in a harsh light. I wonder how many people-hours and resources are spent in EMR training and I wonder what would happen if we spent 10% of that on communication skills.

Kevin’s mother had another baby and elected to participate in group well-child care again. I am lucky enough to be co-facilitating that group with a great pediatric resident.

Maybe if we had done a perfect job with communication, Kevin would not have died. We will never know. But we do know that when his parents were at their lowest, when putting 1 foot in front of the other and remembering to breathe constituted much of what they were capable of, they chose to come to what should have been their son's primary-care visit. They viewed us as a safe place to grieve and to share.

Somehow we should create nothing less for all our patients.

Dr Rosenthal is assistant director, Robert Wood Johnson Foundation Clinical Scholars Program, and associate research scientist, Department of Pediatrics, Yale University School of Medicine, New Haven, Connecticut.